I Can 31 for 21 Day 15

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Life is precious!  Life is short!  Life needs to be lived! 

The last few months have seemed to be filled with sad news and more sad news.  Too many cancer diagnosis to count for too many families.  Too many people having to watch their loved ones suffer through the pain.  These are not news stories on the TV these are my extended family and close friends struggling every day to see God's plan in the pain they feel. 

I hate watching those I love have to go through these things.  I wish I had profound things to say that could make the grief easier.  It seems that I'm saying I'm sorry all too often.  I'm sorry you have to go thru this, I'm sorry that you have to deal with that, I'm sorry your loved one is dying.  I wish I'm sorry was enough. 

I wish I could wiggle my nose and make it all go away.  I can't.  I can learn my lessons from watching these stories unfold.  I can forgive and not hold grudges.  I can try harder to be a good friend.  I can reach out to those that are down and need some encouragement.  I can say a prayer each day for all of my friends and family who are discouraged and ill.

 I can refuse to be paralysed with fear.  I will not let fear of losing my loved ones stop me from loving.  I will not let fear stop me from living my life. 



Interview with Rex 31 for 21 Day 14

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Tonight I decided to ask Rex some questions about Riley and what it is like to have a brother with Down syndrome.  I think you'll enjoy reading what he had to say.  Rex has such a sweet soul.  You loose track of it underneath the stinky potty humour and the wrestling.  He would rather have a ball of any sorts to kick or throw but he was super exited to sit down and read Riley a bedtime story tonight.  This boy just makes my heart swell with pride. 


What is Down syndrome?
Down syndrome means to me that they need a little extra time to learn things.  Like talking takes him longer and that's why he watches Singing Times to help him learn to talk and do sign language.


What do you think about having a brother with Down syndrome? 

I have so many ideas I need to pick one.  It makes me happy because I can read him books and help him learn to speak and ride bikes. 


What is the best thing about having Riley for a brother?

We get to wrestle so that I can help make him stronger.  We read books and play games.  I love playing with Riley.  The second best things is shooting hoops with him.  Almost everything is great about having Riley for a brother. 

What is the worst part about having a brother with Down syndrome?

That's a hard one.  He hits and kicks and bites and he tackles me.  There's not that much stuff that is bad about Riley.  Do you think that would be different if with a little brother that didn't have Down syndrome?  Just a tiny bit. 


What would you do if someone made fun of Riley?

I would say that is it is not funny to laugh at some one with Down syndrome.  It just takes a little bit longer for them to learn. 

How would it make you feel?

It would make feel sad.  I would be sad that someone was making fun of someone with Down syndrome. 

What would you tell a friend that was worried about having a brother with Down syndrome?

That its fine.  That he is just a regular person but it just takes a little longer for him to speak and walk and to potty train him. 



Hero Worship 31 for 21 Day 13

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The story is always better with Rex reads it to me!



Rex has super powers and when he uses them  he can get his little brother to do pretty much anything.  I think Rex has recently begun to appreciate and understand just how much Riley looks up to him.  From the day Riley was born he and Rex have always had a special bond.  It is truly amazing to me to watch them together.   Rex was the first to get Riley to smile and for a long time was the only person Riley would smile for.  Riley wants so badly to be big and to be able to do everything that Rex does.  It is such an amazing motivator for Riley and I think a large part of why he is doing so well with his physical development. Rex is truly an amazing big brother.  He is patient and kind but also doesn't baby Riley or let him get away with things.  He handles the hero worship well and truly loves every second with his little brother! 

We have recently discovered that Rex is quite excited to read to his brother.  When I told him it was time to read after dinner he hurried to get a book to read to that Riley would like.  I love that Rex is super excited to do things like this, that he is so proud of himself that he can teach Riley.  They have a beautiful relationship!

A while back a friend of mine did an series of articles on our family.  Here is a link to the part about Hurricane Riley's Big Brother Rex  Becca does a great job of summing up their relationship. 

Biotech Companies Developing Blood Tests for Down Syndrome 31 for 21 Day 12



Riley says "don't be scared"



Biotech Companies Developing Blood Tests for Down Syndrome « Jennifer Margulis

A blogger friend of mine shared this yesterday on facebook and it totally disturbed me.  I have to agree that I think every person has the right to make choices about their own life.  Everyone will be guided by their own sense of right and wrong and their own religious beliefs. 

That said it makes me incredibly sad that by making this test a simple blood test so many more babies with Down syndrome will be lost before they ever took a breath.  I realize that the unknown is scary and to most of us having a child with Down syndrome throws us head first in to the unknown.  I was scared senseless when we learned of Riley's diagnosis.  I am very thankful that we had the time to process and learn about Down syndrome.  I would have hated to have to deal with the stress of a newborn in the NICU and try to process and learn about Down syndrome all at the same time. 

I can't imagine our world without Riley and all of the people that have become a part of life due to that extra chromosome. 

If  I arrive and need a little extra help to get started..

I promise I'll turn out to be a real treat!

My friends and I will keep you smiling!

Halloween Fun 31 for 21 Day 11

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Its hard to believe that two years ago at this time Riley wasn't walking yet.  His first year tricker treating at the Guild School and he was riding in a wagon. His duck costume is one of my all time favorites.  My mom made it for Rex when he was 1 and it is the cutest thing ever!

The boys had a great time with Ella and Hunter tricker treating at the mall where it was nice and warm. 

The duck was ALL DONE!

Lil duck had some kisses for bubba.

By last year Riley had the tricker treating idea down.  He was on fire last year as we trekked around the mall. 

We had so much fun they were both tuckered out!

Rex has his outfit and mask picked out.  Its an icky zombie mask that Riley is currently having a lot of fun running around.  I much prefer the cute cuddly outfits over the dark scary versions.  I'm still working on Riley.  I was hoping for Elmo but I can't find any that I like that I'll fork out the cash for.  OK I admit I haven't looked super hard but still...  I'm pretty sure there is a dino suit around here somewhere that will work. 

Randomness 31 for 21 Day 10

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In honor of 10-10-10 I'm going to share a list of 10 random facts about me.  I would love if you all would post your own lists of ranomness. 

1.  I secretly enjoy reading the Diary of  Wimpy Kid books with Rex.  They make me giggle. 

2.  I have an absurd amount of JELLO in my kitchen.    Tonight when I unpacked all the groceries filled with gluten that my mom purged from her kitchen this week after my dad was finally diagnosed with Celiacs I discovered the strange fact that we both collect jello.  Sugar, no sugar, red, blue you name it I've got your jello needs covered. 

3.  I try really hard to not want "stuff" since I know that stuff isn't what is really important.  My list of stuff that I really really want is growing though.  I would be super nice to have just a few items on it...  ya know a new kitchen,  a fence around the back yard and a really really pretty and lovely Coach purse. (Rebecca you know which one I mean)

4.  I wish I could find the motivation and perseverance to stick with an exercise and diet program.  I have some serious work to do and need to get started. 

5.  I want to go back to school but I can't decide what I want to be when I grow up. 

6.  I think I have some of the most amazing friends ever.  I gain great strength from all my mommy friends-  both in real life and in the blogs that I read. 

7.  Have dreams of a fairy flying into my house at night and cleaning everything while I sleep. 

8.  I think one of the most beautiful sounds in the world is the sounds of my boys giggling.

9.  I love creepy crime shows. 

10.  I thank God every day for giving me two beautiful boys and a great husband to raise them with. 

Candyland 31 for 21 Day 9

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We had a relaxing Saturday afternoon that included naps all around and Riley's first game of Candyland.  Well at least his first game at home.  I'm not exactly sure why we have never pulled it out before.  Riley knows all his colors even if he tries to say he doesn't know orange. The idea of trying to have him sit and concentrate on a game just doesn't always sound like a fun thing to do. I'll admit it I take the easy way out.  I save a lot of the messy headache inducing experience for Riley to do at school or with his therapists. 

 He did really well with the game.  There was squirming and growling that is to be expected with Riley but over all I'd call it a success.  I think we will do this again.  Rex was a HUGE Candy Land fan at Riley's age.  I think Rex had just as much fun as Riley did playing a big boy game with big brother.